In the history of human kind, misfortunes such as large-scale epidemics, have shaped societies through their contribution to development of the understanding about natural phenomena and social relationships in determining health, disease and death as well as through generating the organised responses to ill-health. At present, the AIDS pandemic has opened a whole Pandora’s box. At least in some of the most affected regions (such as some countries of sub-Saharan Africa) an almost overall restructuring of societies is being anticipated. HIV/AIDS has caused, and will continue to cause, immense suffering. Yet it also provides an opportunity for us to re-examine and re-work several social institutions and notions which are of immense consequence to the well being of the affected and the societies in general. Several issues call for such restructuring exercises for control of HIV / AIDS (for instance gender relationships, the conditions of women in prostitution, determinants of sexual behaviour patterns, the media’s role in the commodification of sexuality, the problem of drug abuse and frustrations among our youth, the issues relating to the access to basic needs and human rights, of the quality of health care services and their relationship with the community, the community support for battered women and orphans, and so on). These issues are of significance irrespective of the threat of AIDS. The need for addressing most of them had been recognised and expressed well before AIDS appeared on the scene, but not much action has been taken on that account. It may be worthwhile to do so now, making use of the opportunity offered by the pandemic. While the need to give serious thought to these issues at a societal level is uncontested, the perspective with which they are to be approached will always remain contested.

AIDS control efforts until now have largely been led by international perspectives, especially in countries like India where the epidemic has arrived later or is of lesser magnitude than in other parts of the globe. Given the contemporary global power equations, this has tended to mean ‘north-centric’ perspectives being applied even in countries of the ‘south’. It can also be contended that the perspectives are not only of the ‘north’ but also of the elite of the ‘south’, and may thereby be alienated from the life conditions and perspectives of the majority. Nevertheless, the global, universalist thrust of the programme has laid down some basic principles of great value – respecting human rights in a disease control intervention; creating mass awareness and providing information to all; positing a public health problem as more of a development issue than a medical issue; envisaging action through partnerships between different social groups within Indian society, with special focus on the working and living conditions of the socially marginalised sections - the poor, the migrants, the women in prostitution.

The translation of these principles into reality, however, requires consideration of the specific context within which they are to be applied. Application of a universal, global set of strategies sometimes, paradoxically, proves counter to the very principles with which they began, while society pays a heavy price for them. For instance the emphasis on the cost of anti-viral drug regimens for HIV/AIDS is of great importance in regions where medical care is assured, but in others it can completely sideline the issue of delivery systems for basic care and treatment of the opportunistic infections and thereby prove detrimental to the basic right of AIDS patients themselves. (That it has also sidelined the debate on rational use of the anti-viral drugs, in view of their anti-immune system side-effects and the immunity promoting action of ‘alternative’ therapies, is an entirely different issue.) Another example is the promotion of ‘sexual freedom’, which may be liberating in some contexts but detrimental to the rights of women under conditions where they have no other ‘freedoms’ and are most vulnerable to exploitation. Yet National AIDS Control Programmes the world over basically follow a similar set of strategies. Therefore there is urgent need to examine the problem in a contextualised manner. It requires an assessment of the existing resources available in each community and in society at large –material, infrastructural, formal and informal support systems, value frameworks and so on – recognising the positive features along with the negative aspects of each. At the macro, societal level what are the factors that allow for the flowering of tendencies of diversity and pluralism, which makes allowance for respect for others rights and one’s own social responsibility, provides care and support for the suffering yet functions without a patronising attitude? A holistic approach to contextualised planning requires building upon the strengths of existing resources and developing interventions to counter the negative and fill existing lacunae.

When we analyse AIDS control in India from a holistic public health perspective, several issues of significance emerge for our examination in such a contextualised exercise. Beginning from the societal view rather than the programmatic, we can isolate and highlight three major issues which relate to (i) sexual behaviour patterns, (ii) the creation of images of the epidemic in the public mind and communication strategies thereof, and (iii) medical care and support of HIV/AIDS cases. In addition, the programmatic and epidemiological issues relate to the structure and management of the programme as well as the question of data generation and projections of magnitude of the epidemic. All these have to be viewed in the light of the universal principles delineated above - the human rights, ethical and legal issues - within the specific contexts.

Unfortunately, adopting universal strategies (not principles) has led to the evasion of many of the issues rather than highlighting them, which is the need of the hour. It is true that contextualised perspectives are not always easy to delineate. The issues are often locally contentious, e.g. perspectives may differ based on caste, class and gender. Given the prevailing hierarchies within the national and local community perspectives, these can also not be the sole arbiter or bases for approaching the issues. Further, they involve very sensitive aspects of human life. Therefore individuals often take an easy way out by avoiding them or trying to ignore their existence. However, by disregarding the debate one can actually lead to more difficult situations and even cause a negation of all the disease control efforts, rather than enhancing their impact. The furore over a year ago about an NGO’s study report on the risk of HIV/AIDS in Uttaranchal is an illustrative instance and a warning we need to take seriously. The issue was of the NGO’s perspective of the need to recognise and avert an impending disaster, versus the community’s protest against the labelling of a whole community as ‘at risk’ to a stigmatising disease based on the understanding that all those who are forced to migrate by the poor economic conditions in a region indulge in extramarital sexual activity. While some viewed the NGO’s approach as one espousing the cause of individual freedom and rights, others viewed it as an international hegemonic attack on the local culture.

Therefore, the need was felt for dialogue within civil society on these issues, incorporating as many diverse perspectives as possible. Besides allowing for wider participation in a wholesome and democratic process, the contribution of each perspective enhances the understanding of issues and takes us towards a more appropriate, deeper, and comprehensive response. Even while public health and development planners and administrators recognize these as relevant issues, they have been unable to access the vast research, scholarship and activist reflection already existing regarding these issues. Sometimes planners/administrators/health professionals may be unaware of the available storehouse of information and ideas collected by the social scientists and activists. Sometimes the ‘language’ and style of each discipline prevents easy access and consideration by those involved in similar activities from other disciplines. This becomes even more complex as the ‘technical’ and ‘management’ sides of AIDS control become equally important to take significant steps. The technical knowledge has to be integrated with the social perspectives. However, mystification of the bio-medical sciences and the lack of transparency of epidemiological data has led to valid skepticism about scientific research. This too has led to debates side-tracking from real issues. For instance, let us examine the recent debate about the existence of the human immuno-deficiency virus (HIV). HIV as the cause of AIDS was pitted against what have been called ‘stressors’ – malnutrition, intra-venous drug use, anal and oral sex, environmental pollution, etc – in a mutually exclusivist framework. This allowed for the sidelining of a holistic explanation of causation, where lowering of immune system functioning due to the stressors created a substrate in which the HIV could thrive. The rebound response to the denial of the very existence of HIV was to reaffirm the primacy of the virus as ‘the cause’ which has allowed the issue of retro-viral drugs to become the central concern of international AIDS discourse and global funding.

Sometimes the academics and social activists are unable to appreciate the constraints and compulsions of the planner, administrator or implementer, which may be inherent in the issue and the conditions being dealt with. For instance, the doctors working within the public sector have all been painted black (as negligent, disinterested people picking up their salaries for doing nothing and devoting all their energies to private practice) without taking into account any consideration of the context or the constraints imposed by the system as a whole, which does not either adequately value the social commitment of health care providers or allow many of those who want to provide quality services, to perform optimally. Lack of recognition of this factor has led to cynicism about the human material, which alone can take action to improve the situation. This does not allow for much constructive thinking towards improving the quality of the public health services, even though it is widely accepted that it is crucial to maintain them in view of the large areas of ‘market failure’ in the health sector. The voices of such committed public sector doctors with their wealth of information could be vital for instituting measures to strengthen the system. Yet at present, these vitals sources are not being tapped or given their due place in public health policy considerations.

Thus, within this framework there are several issues that are impacting on HIV/AIDS control and need to be addressed at a societal level. Three of the broad areas were delineated for the present effort at organising a dialogue – (i) sexual behaviour patterns and their determinants, (ii) the creation of images of the epidemic in the public mind and communication strategies, and (iii) medical care and support of HIV/AIDS cases.

The three issues are very different in their scope, as well as in the composition of people dealing with and attempting to understand them, and in the measures to tackle each one. However there are areas where they overlap and others where they converge and link up. The common place at which they converge, however is the point at which the various factors all influence the course of HIV/AIDS. It was hoped that the dialogue would bring the linkages to the fore and take us towards a more comprehensive understanding of the problem. Thereby it was hoped to bring to the fore, the more effective and realistic approaches to the suffering caused by HIV/AIDS.

The Role of Medical Care and the Health Care System

The quality of the medical services available is an issue of grave concern today for all sections of society. A huge quantum of public and private sector services exist, but their trustworthiness is doubted by all. Lack of access to the available medical services, sometimes due to their geographical distribution and sometimes due to their high costs, is a major problem for the poor as well as the middle-class. There is also wide spread malpractice in the form of negligence and corruption by medical and paramedical personnel. The feeling of belonging to a different and perhaps higher social status often causes a sense of alienation of the professional ‘expert’ from the majority. Their lack of familiarity with local realities are also reasons for their isolation. These factors will obviously influence their response to HIV/AIDS as well. What are the criteria that should be applied for the setting of a minimum standard for the quality of medical care, ensuring access for all? Besides these general public health issues, issues of management and governance of a disease control programme within a comprehensive public health approach are also of vital importance.

Three possible roles can be assigned to the medical system in relation to AIDS – (1)as transmitter of HIV, (2)as provider of care and support, and (3)as creator of attitudes towards the disease and the diseased. However the AIDS control programme has paid little attention to the medical system and delivery of medical care to HIV positive persons and AIDS cases. The medical system has primarily been invoked only when HIV testing, anti-viral therapy or vaccine research is in question – i.e. in issues that relate to legitimacy of biomedical technology, the medical equipment and pharmaceutical industry – and only in a very limited way for the purpose of dealing with suffering.

The perspective on medical transmission of the AIDS control efforts until recently provides another example of the ignoring of local conditions and the adoption of a universal/northcentric perspective. HIV transmission through blood transfusion was identified as a problem area by the US in the early stages of the epidemic itself, and ensuring blood safety became an important plank of the global programme. The quality of medical services there raised no other risks, but a consideration of our medical services, in the public and private sector, makes other possible routes of transmission evident. The callous negligence of routine safety precautions on a wide scale – of injections given at a very high rate and without adequate sterilization of needles, blood samples drawn in wards or laboratories using the same syringe, etc. – could be transmitters at a significant level and is being documented for transmission of various Hepatitis viruses. But no attention has been paid to this aspect in the AIDS control programme, except to promote disposable equipment. Incidents such as that of panic in Chochi, a Haryana village, generated by detection of an HIV positive person and the fear of contagion from him to others by means of the local village doctor’s syringe, made headlines. They still continue to suffer from the stigma of the disease. People working with HIV positive people have found that upon good, indepth history-taking, other routes of transmission were ruled out and routine medical intervention seemed the only plausible source of HIV.

The surveillance system data does not, however, give any consideration to this possible route and the official data does not reveal this at all. Yet disposable equipment has been advocated from the beginning! Is it the most appropriate solution in our context? Familiarity with the real conditions prevailing in the health services and the practices of health care providers is necessary to envisage the possible dangers and possible solutions.

The role of the medical system as care provider is undisputed but this activity was not considered a priority area for the AIDS control programme in the early years of identifying the epidemic. Appropriate treatment, supportive therapies, psychological, social and economic support are all necessary components of the AIDS control package. The imperative for strengthening the general health services to provide medical care is evident from the fact that opportunistic infections will be the main symptoms and they require immediate attention and treatment. Families, communities, health care institutions and social work organisations, all need to be drawn into a network, all working in tandem to provide support and care. The ‘family to community to hospital continuum of care’ will require the developing of systems of cooperation and referral, for which the doctors and paramedics will have to be specially oriented. Are ‘hospices’ an adequate and cost-effective alternative to the developing of this more difficult social and organisational exercise? Or do both have to be developed for most effective care of the persons with AIDS? Will the current health sector reforms that are undermining the general health services not prove detrimental to both AIDS cases and all other patients?

What role are the public and private sector health services expected to play in the provision of AIDS care? Ill persons require not only effective medical care but also informational, moral and emotional support. Should this be provided by the family and community alone, or by specialised ‘counsellors’, or by the health care providers? At present the strategy is to have specialised counsellors. How effective can this be at our scale of operation? In this context, the improving of communication skills of the health care providers is a long felt need as well as the necessity to humanise their dealings with patients. Counselling is a part of this doctor-patient interaction. The question to be raised here is whether it should become part of the AIDS control strategy.

Another controversial issue is with regard to the use of anti-viral drug regimens as prophylaxis and treatment of HIV positive persons is yet an unsettled issue. Their effectiveness needs still to be proven, especially in conditions of infection overload and malnutrition. On the other hand the negative consequences of the antiviral drugs have been proven. This is part of the larger debate on theories of causality, a holistic vs a narrow biomedical view. The high cost of the drugs is therefore only one of the issues.

Apart from its importance in allaying physical suffering, good patient care with a positive attitude by the care providers is crucial for the destigmatising of the disease. However priority has not been given to orienting doctors and paramedical personnel for the care of HIV/AIDS patients in the AIDS control programme and reports of refusal to treat HIV positive persons or their maltreatment continue to surface. Can the doctors and paramedical personal be expected to automatically acquire attitudes different from the wider social attitudes? Shouldn’t we be undertaking an all-out effort to make them the harbingers of positive images of AIDS?

An examination of the issues related to the quality of medical care in the light of these questions is important both for AIDS control and for improving the health services in general. We hope to highlight them and identify points for urgent action through dialogue between care providers and policy makers and health system analysts.

All points of social interaction across differing identities and acknowledged differences can be either points of conflict and assertion of power, or of dialogue and sharing. Gender relationships and sexual interactions too involve all these dimensions. When sexual relationships are based on violence and power rather than affection and mutual communication, they are mutually satisfying. Herein, responsibility for the other’s well being automatically becomes part of such relationships. While the idea of ‘responsible sexuality’ has emerged as one of the components of AIDS literature, several unresolved questions prevent effective interventions in that direction. Some of the questions related to sexuality and sexual behaviour from a public health perspective can be summed up as follows: -

1. The macro societal view requires that issues related to sexuality be addressed in each context in terms of – a) the prevailing value system (i.e.what is viewed as ideal), b) the norms (the practice of a majority of the population), and c) the nature and proportion of practices different from the norms. Examining all three provides an understanding of the prevailing ‘risk factors’, the ‘cultural barriers’ to AIDS control, and the ‘cultural resources’ available for AIDS control (the last finally finding official recognition recently; UNESCO, 1999).

2. The contemporary issues in sexuality at the population level are different for men and women today. For instance, the women have been bound by social and cultural constraints for too long and need to be freer socially and psychologically. On the other hand, rising expectations of ‘freedom’ and ‘enjoyment’ among men who have no socially legitimate means of fulfilling them has led to increasing perpetration of sexual violence against women ill-equipped to handle it. Greater self-restraint and responsible expression of their sexuality is therefore called for from the men. Sensitive handling and cautious mass interventions are necessary in such a situation so that they lead neither to greater constraints on women, nor to further irresponsible sexual behaviour by men. How can such an optimal balance be achieved? What are the essential prerequisites that will allow women to enjoy sexual freedom without its rhetoric becoming a means of greater exploitation for them? How can a sense of responsibility be sustained without a patronising, patriarchal attitude?

3. There is also a perceptible need for allowing a legitimate space to the ‘sexual minority’ of ‘gays’ and lesbians as well as a forum for voicing or separately focusing upon their conditions, aspirations and needs. Can the issues of the majority be addressed and at the same time a societal atmosphere be created allowing for social experiments and behaviours different from the norm, to be undertaken peacefully? Does greater emotional bonding, mutual respect and individual autonomy within families promote pluralism with a natural acceptance of diversity? What positive elements exist within our families and communities that can promote such pluralism even while the collectivity is strengthened? What negative elements need to be tackled in this context?

4. All the time keeping in mind the fact that sexuality is one important dimension of each human being’s life, one must study and explore whether focusing upon it as a primary identity would be constructive or detrimental to either ‘ the majority’ or ‘the minority’ in the given context.

5. The women in prostitution/commercial sex workers occupy a special place in the sex culture of any society even while they remain socially marginalised. They are crucial to any AIDS control activity as a group for whom HIV infection poses a specific ‘occupational’ hazard. They need special protective measures in the form of increase in their negotiating capacity with clients and with the controllers of the flesh trade, better living and working conditions, and basic services such as health care and education. The problem of AIDS has helped bring public attention to their material needs as well as political rights, but is that adequate as a societal response? Is legalisation and licensing of the ‘profession’ an adequate mechanism to ensure their empowerment to fight for their well being? Will social legitimisation of commercialisation of sex through this legal/administrative measure contribute to improvement in the life conditions of these women? Or will this only strengthen the market-led explicit commodification of sex and the image of women as sex objects, thereby promoting a culture which would increase demand for commercial sex in even more aggressive, inhuman ways (the increasing demand for younger and even younger girls is an example of this)? What consequences will such measures have on the attitudes towards women in general? Will it increase the inculcation of more and more women into the trade? What other changes are necessary to improve the conditions of the present women in prostitution, and protect all women from becoming mere objects of sexual gratification which leads to violence in its acute form?

We would like to bring together diverse activist and academic perspectives on these questions to generate a framework which addresses the sexual exploitation of all sections of women, even while identifying the inherent points of tension between them.

Creating Images of the Epidemic

Fear of a fatal disease, stigmatisation and isolation of persons who are perceived as likely to transmit it, is one ‘spontaneous’ human response witnessed over history. The other is viewing any disease as a part of life, and simultaneously caring for the suffering persons as well as devising societal structures that limit the spread of the disease. HIV/AIDS is as yet only an insignificant part of the social experience in many parts of the country (3.8 lakh HIV positive persons and 29 thousand AIDS cases in an over one billion population with varying rates of HIV positive persons in different regions). Yet awareness of it is high in most places, especially among the urban population including professionals, as it has been actively generated through AIDS control efforts. It is thus ‘mass communication’ and not first hand ‘community experience’ that has shaped much of the response, unlike most diseases in the past. Both types of responses are already evident towards the disease and those labelled ‘diseased’. However, the mass communication messages and the reports of the negative experiences of HIV positive persons have added to the fear and stigma.

Not only was the proactive step of providing patient-sensitive medical care to minimise the negative images not taken up as a priority, negative images were further generated by the conscious manner in which the magnitude of the epidemic was highlighted. Fear of the disease has been generated by the manner in which the magnitude of the epidemic and its consequences have been projected, and this led to the enhanced stigmatisation of affected persons and groups. Fortunately, this has now been officially recognised (Govt. of India et al, 1999). But this recognition is yet to spread to most sections of AIDS workers. The counter productive image created by the manner in which the onus was put on the ´high risk groups’ for transmission has long been recognized as one adding to the stigma and that has, fortunately, also been given up in explicit terms in HIV/AIDS literature. There is a continuing need to spread the awareness about AIDS but this has to be achieved without either exaggeration or denial. How can this be done? Some efforts have been made in this direction but it continues to be a difficult problem.

It has been widely acknowledged that the AIDS IEC has led to increased awareness of the problem but not to much behavioural change. How can that be best done? Is it a resultant of the communication strategies or of wider social factors?

The image now being created in programme documents – that "AIDS is a development issue, not a health issue" – is also double-edged. It has been eminently documented that poverty, disparity and power relations are crucial elements of the social context that enhance the spread of HIV. The absolutely central role of developments in economic, social, political, and cultural spheres such as the structural adjustment policies, globalization and a consolidation of anti-poor, anti-diversity perspectives in promoting the spread of AIDS has also to be acknowledged. Material conditions and value systems are both undergoing drastic changes. Societal value frameworks, of relationships, of notions of pleasure and responsibility, are all in a state of flux. How do we view their impact on HIV/AIDS? How do we identify the negative and positive trends? What bulwarks can we create against the negative changes and how can we strengthen the positive trends?

AIDS awareness messages and the IEC strategy have promoted the commodification of sexuality. What can be the strategies for mass communication of ideas about ‘responsible sexuality’ in the light of the related issues discussed earlier? How can these issues, of crucial importance for achieving and sustaining any measure of success in AIDS control, be addressed? What links need to be drawn between policy making and public debate at the larger level?

At the same time the dichotomising of ‘development and health’ is very much like the biomedical perspective in that determinants are isolated and compartmentalised rather than considered in their entire complexity – that all diseases are both ‘development’ and ‘health’ issues. It denies the possibility of learning from lessons provided by earlier public health programmes such as the manner in which special treatment centres added to the stigmatising of the cases of leprosy, how the ignoring of general health services (because of vertical malaria control and family planning programmes) caused a resurgence of malaria and limited achievements of the FPP. The simplistic manner of linking development is concretely counterproductive in that it absolves the medical system of any responsibility. It also allows for the ignoring of the need for any significant intervention at the level of the general health services. The responsibility is now being given to specific isolated ‘new’ institutional forms, e.g. NACO and the State AIDS Control Societies for the programme instead of the Directorate of Health Services; special counsellors and counselling centres instead of developing counselling skills of health care providers. While recognising the need for a ‘continuum of care from home to community to hospital’, it has been reduced to ‘community care through a specialised hospice’. In the Indian context ‘community care’ still largely means care and support by family, kin, friends and local health care providers. This social support frame can be given the requisite back up through an effective Primary Health Care System and this is one way to evolve a large response to the need for more care providers as the number of cases increases. If general medical services remain inaccessible to large sections how will AIDS care reach them? But this is not yet a major concern in the AIDS discourse.